Guyanese family with sick child seeking multiracial bone marrow donors

Guyanese family with sick child seeking multiracial bone marrow donors

Gaiutra Bahadur writes:

“In early April, my nephew Owen was diagnosed with severe aplastic anemia. It is a rare disease in which the bone marrow stops making enough blood cells: red blood cells that carry oxygen throughout the body, white blood cells that fight infection and platelets that help stop bleeding. The only guaranteed, permanent way to fix this condition is a bone marrow transplant.

We are searching for a bone marrow donor who is a perfect match for Owen. Genetics and ethnicity play a role in who might be a match. Unfortunately, only 4% of the 12.5 million people registered in the US National Bone Marrow Donor Program are (like Owen) categorized as mixed race.     

WHO IS OWEN?

Owen is a very clever, beautiful six year-old obsessed with dinosaurs and soccer (Tottenham is his team). Some days he wants to be a paleontologist; other days, he wants to be the next Christiano Ronaldo or Harry Kane. During multiple hospital stays in recent months, Owen learned chess and Scrabble. He’s been trouncing his family at both. He is observant, sensitive and shy—though he’s been surprisingly the extrovert with the nurses, doctors and child life specialists he’s charmed at Newark Beth Israel these past few months.

Owen lives with his family in New Jersey. He’s son to Dakashna, an 8th grade English literature teacher, and Matthew, a network systems engineer. And he’s big brother to a 2-year old who shadows his every gesture and his every mischief. We call the two of them Hurricane and Tornado.

TREATMENT

We are pursuing a treatment that suppresses the immune system in an effort to help the bone marrow recover its purpose. We are hopeful this will work. It does in 60-70 percent of cases. We’re two months into the treatment and should know by late September if it’s helping Owen produce blood cells.

If this immunosuppressive therapy doesn’t work, he will need to have a bone marrow transplant.

NEXT STEPS

We’ve been advised to start looking for a bone marrow donor now. It takes about four weeks for someone who registers with the National Bone Marrow Donor Program to enter the database and show up in searches by transplant centers.

Markers in our genes (human leukocyte antigen or HLA markers inherited from each parent) determine who is a good match for a bone marrow transplant. They determine what the body reads as foreign to it and might, as a result, attack. We are looking for donors who match all of Owen’s HLA markers. This will reduce some of the risks of a transplant.

Anyone might be a match but it’s more likely that someone multiracial will be the match for Owen. It’s harder to find a match for multiracial people; along with South Asians, Asian-Americans and African-Americans, people from multiple ethnic backgrounds aren’t well represented in the national and international donor registries. We are reaching out to all groups of people, but also trying to recruit potential donors who are South Asian, Caribbean or come from a multiracial background. Owen is half white (with roots in England, Wales and Germany) and half South Asian Caribbean (with roots in Guyana).

Our goal is to increase the number of people on the national and international registries who might be a perfect match for Owen by the time we next meet the transplant doctor, in late September 2017.

HOW YOU CAN HELP

(1) Register for the National Bone Marrow Donor Program. The preferred age range for the registry is 18-44, though they will accept donors up to the age of 60.

Joining the registry involves a cheek swab (either at a community drive or through a kit-by-mail). This genetic test is free if you’re 18-44. By registering, you are saying that you’d be willing to be a donor for anyone you might match who needs it.

To find out what drives might be happening in your local area, follow this link. To send away for a swab kit, follow this link.

If you’re in the UK and want to join the registry there, follow this link for more information. Our doctor will search international databases as well. Other countries have their own registries, and if you’d like help finding one where you are, we can help you do that.

(2) If you can’t or don’t want to join a national registry, but would instead like to be tested to see if you’re a match for Owen, there is a commercial lab test available. You can send away for a swab kit by following this link. The test costs $195 if you’re in the US and more if you’re outside.

We will pay that cost for you.

If you’re interested in taking the private test, please let us know so that we can get you the information you’ll need on the transplant center and transplant doctor as well as reimburse you for the test.

(3) Share this appeal widely. Also, please share with networks that include Caribbean, South Asians, Brits or multiracial people. Please ask people to consider either joining the registry or being tested as a potential match for Owen.

FOR MORE INFORMATION
If you have questions, please contact Owen’s aunt Gaiutra at… gaiutra.bahadur@gmail.com

The Web sites of the Aplastic Anemia and MDS International Foundation and Be the Match provide excellent information about Owen’s condition and the donation process. Please check them out.

If you’d like to find out more about the challenges multiracial people face in finding a bone marrow or stem cell donor, this article in the Washington Post explains the problem. The film Mixed Match also lays out the issue.”

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